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over 3 years ago
BreeT said...

Your in a tough situation. My mother has had Parkinsons for 17 years also. My dad is her primary caregiver and I feel guilty that he has to do it alone. I do bring her to my house twice a week to give him a break and I go over and clean and do laundry and cook a meal or two. If your brothers won't take turns giving you a break then they need to contribute finacially and hire a caregiver to come and give you a break. My sister moved from from the west coast to the east coast to get as far away from helping as she could. She lives rent free, has no car payment, and gets free health insurance. In other words she gets to keep her whole pay check to use on herself. She never sends any money to help pay for my mom's care. Flowers for mother's day and a card at Christmas because she's "broke" Ha! My mom was in the hospital for 27 days, went home on hospice for 6 weeks, fell cracked her skull, back in the hospital for 15 days, then a nursing home for 90 days and finally back home on hospice again. My sister in all that time did not come visit or send any type of gift to my mom. My dad has now been caring for my mom with a g-tube (feeding tube) and has to care for every daily need 24/7 and my sister is content to live her life. I have a husband and three school age boys so my hands are full and our money doesn't stretch too far. If anything were to happen to my dad I don't know what I would do. I have seriously though if I would be able to put her in a home. The reality of doing it 24/7 scares me. I hope that you know what a blessing you are to do this for your mom. I just hope that you are able to find some time for yourself.

over 3 years ago
Plants said...

I am so sorry to hear of your delema, but I also have somewhat the same problem.

My wife has had PD for 14 year, progressively getting worse. She broke her hip in a fall last Dec. and I must be here 24/7 to take care of her. This shows how GREAT our heathcare is in this country. I can not afford healthcare and could loose everything if I get ill or very sick. I am not yet old enough for Social Security. I have been unemployed for 1 1/2 years and cannot qualify for unemployment due to the fact that I must care for her. I am starting a Native Plant Nursery at our house for some type of income, but not many people can afford to buy much with this economic climate.

I only have 1 sister and my mother living near us and my sister works and had a disability and my mother is 86 years old. Neither can help take care of my wife. My wife only has a son living nearby and they don't do a lot (day care or some time off for me) Our daughter-in-law does come about once a week for a few hours and takes here shopping sometimes. I have to get her out of bed, shower her, cook and feed her and all the rest 24/7.

We are living on SSDI and a small pension, all with a mortgage and living expenses. At least you have siblings that COULD do some relief for you. You must DEMAND that they give you some time off. I actually had 1 afternoon recently to go for a hike in the woods. It helped a lot. I need a few days away, but have no idea how I will be able to get that.

As I said, DEMAND that they help. They should be responsible as well and YOU need to be sure to make that known to them. You NEED THE HELP.

Caregiving is a very very hard job, as I have learned.

Good luck and my best to your mom.

over 3 years ago
Gail 1001 said...

How sad that people have to deal with this alone! It's just so hard on the caregiver to do it all. My mom is not at the point of needing a feeding tube, but knowing how demanding she is now, I can't imagine taking care of her when she gets to that point. Our hospice people are bathing her 3/week and a nurse comes once a week to check on her, but I'm not sure they'll continue after they evaluate her. She's really not hospice material yet. She is losing weight, so they said that weight loss is a criteria to continue hospice, so we'll see. Hospice is nice, but it doesn't really let you leave the house or do anything for yourself. It just eliminates some things that you might have to do for the patient. Hiring an outside agency is out of the question financially. So I don't know. My brother that was holding out so strongly against a nursing home called me Saturday to say he's reconsidered. He realizes it's been hard on me and I've sacraficed a lot. He just asked that we wait till after the holidays. I'm going to try this program that's offered through a local hospital where they'll pick her up and keep her all day like a daycare. All her medical would be provided by them and their doctors. Only problem is I have to get her qualified for Medicaid. With Medicare, the program costs $2,400/month. With Medicaid, it's completely paid for. She can qualify for Medicaid, so it's just a matter of red tape and getting the application and all the documents they require together. Once she's on that program, if they feel like it's not safe for her to stay at home, they'll transition her into a nursing home (they contract with one that I had actually been looking into). So that would be good. It's just a tough situation for anybody in our situation. Good luck to all of you!! It's not easy! God bless!!

over 3 years ago
BreeT said...

I only wish my mom would qualify for Medicaid, they have a program in CA that provieds for in home support, unfortunatly my dad purchased a piece of property with a mobile that they rent and that disqualifies them from any assistance. He is able to hire a caregiver in addition to my help. My mom's current insurace "Scan" would pay for her to go to daycare three days a week but my dad does not want my mom in daycare unless I go and stay with her. I think it would be an excellent opportunity, especially if your mom is able to qualify for medicaid. That might be enough of a break for you to be able to keep her longer. After spending 90 days visitin my mom in the nursing home I had come to accept that it might be the best thing for everyone, however now that she has been back home with my dad for the past 8 months I am so glad she is in her own home. My dad took my mom off hospice. He didn't like having to stick to their schedule and as you said they are just in and out. My mom would still qualify based on the fact she sleep almost the entire day and night. She is only awake for few hours a day. She used to try and get up and even leaving the room was a risk. We bought special alarms that would go off if she left her care and even a soft lap belt for the times we had to be across the room. She would not listen when we told her that one of us had to be there if she needed to stand up. For the most part she has now accepted that and does not try to get up until we can come help her. Some days she will eat for us other days she refuses to open her mouth. The feeding tube was a good decision for us. I know it's not for everyone. But we can give her medication through the feeding tube as well as nutrition drinks. That way we can be more relaxed at meal times when she is not interested in eating. It is very HARD to try and get you parent to eat for you. I am not able to get her to the shower any more at all. My dad does this. I learned how to give her a sponge bath. It is safer for both of us. I still take her shopping and she still goes to church. It's a day at a time around here. She will be 71 in Jan. and next year they will celebrate their 50th wedding anniversary. We have a lot to be thankful for in spite of it all. Blessings to you and your family situation. Check into In Home Support Services a division of Medicaid and see if you mom could get up to 40 hours a week of in home care. It is available in CA to families that get qualified.

over 3 years ago
Gail 1001 said...

What's wrong with the picture when you have to be destitute to get care? Geez. I've heard of couples getting divorced so that they can qualify for Medicaid. Ridiculous.

I'm definitely going to do the daycare program. I think you're right. Maybe if she goes during the day, it'll give me time to recharge my batteries and I'll be able to keep her here longer. I don't know. I'm just drained and I know that her disease isn't really that bad yet. Can't imagine dealing with it when it does get worse. She's 81 and other than the Parkinson's she's healthy as a horse.

over 3 years ago
tlabney said...

OMG!!! I SO relate! My mother did everything for everyone in the family, always, to the point that it could never be repaid, like anyone considered it. When she wasn't useful any longer, no money & they trashed her house, no one came for holidays, to fix anything, to make sure she had food or heat. I took her to every doctor appointment, ER visit, shopping, etc, & tried to maintain both homes until I just couldn't anymore. Since I live next door, they just all figured I had it taken care of. None of them would do anything. When she got to where she couldn't stay alone, my sister took her in, to spite me over a fight we had, & wouldn't let me see her. She spent all her $ and then dumped her, literally, in a nursing home. My older sister & one niece is all that visits her, & the rest of my very large family just doesn't bother. I fought so hard to keep her at home, even hiring someone to be there, which I couldn't afford. No one could spare $10 for a prescription. For years, I cycled from begging, resenting, to telling them they were the ones missing out. Now, other than the one sister, they can all... well, you know. I haven't done everything right, but I will be able to stand before the Lord one day and say I did right by her, as much as my human condition could do with no help. God bless you.

over 3 years ago
Gail 1001 said...

That's insane!!! Family trials really bring out the true colors, huh? Yikes! All we can do is the best WE can do. I'm done expecting my brothers to react like I think "I" would react if I were in their place. Ain't gonna happen!

over 3 years ago
eva s avila said...

i care for husband with p.d. it is very agressive he can not do any thing he is so stiff he is so sad, but his dr. just told us it becoming more agressive,it is making him more disable like he had the disease for years but it has being for only 33 months.

over 3 years ago
Abhayam said...

Caretakers are the worst effected in terms of personal sacrifices they do. it is not easy as one has to keep his or her personal needs aside and cater to the patients. Indeed, anyone can get PD be it father, mother, wife, for example. Nevertheless, in case of parents, it is the duty of children to take care of them.

When the entire burden of taking care of the patient falls on one sibling, it can create depression and resentments. In this case, the affected sibling should seek legal recourse when everything else fails to convince others to share the responsibility of taking care of the parent.

Interestingly, support groups provide guidance and moral support for the caretakers. Find out a local support group for PD in your city and seek their help. Your hospital or doctor you are visiting with your patient should help you to join a support group.

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over 3 years ago

My father has just started using a feeding tube this week and has Parkinson's. He is in the hospital and I live out of town, in another state. My older sister is his healthcare surrogate and tried to convince the nurses not to release any information about my father to me. My father is completely able to make his own decisions. She did this without him knowing it. The social worker explained to my sister that as long as my father is able to make decisions that her P.O.A. and healthcare surrogacy were not in effect. My sister and I do not get along. The night before she went to the nurses and defamed me, she called me and talked to me for nearly 4 hours. She was trying to provoke me into saying things that would make me look bad. I found out later that she had recorded the call. I am very concerned for my father's well-being with the influence of this person. She told me she is not my sister by choice. The social worker spoke with my father and he told her that he did want me to be able to talk to his healthcare professionals about his condition. I have worked for over thirteen years as a certified nurse's assistant and homecare manager for elderly and disabled persons. My sister is trying to keep me from having anything to do with my father's care. When I visited him last November, she tried to make him think that I was trying to establish residency. It doesn't matter what my sister said to the nurses, what matters is that I am able to communicate with them about my Dad. I expect further flack from this person and am concerned for my father's healthcare. This siter has also been able to convince my father's bank to put her as Guardian on his savings account even though he is an independent adult, he has not been determined by a court of law in Iowa to be in need of a guardian. She throws aropund the fact that she is my father's P.O.A. and some professional people bow down to her for it.

over 3 years ago
waheenee said...

First of all you need to get POA for health care and finances so you can make the decisions regarding your mom since you are solely responsible. You also need to go away for a weekend and have your brothers be responsible for her that entire weekend. They can make up their own schedule but you and your family need to be gone. Then they may better understand what you go through on a daily basis. You also may explain to your brothers that you were willing to care for your mother but the situation has changed because she now requires the care of a baby and you can't fulfill that need. There comes a time when you have to think about your own sanity and well-being. It's so easy for a woman to feel guilt but you need to realize that this is the ONLY life that you have and it can't be about everyone else.

I may seem stern in what I'm saying but I have given about 8 years of my life to my husband who is unappreciative and very demanding. I had to have him placed in a supportive living facility because of his behavior. I too had no help from anyone and almost lost my own mind.

I wish you all of the luck in the world and hope your brothers come around. They need to understand your exhaustion, fear, pain, hurt and hopelessness.

over 3 years ago
Gail 1001 said...

Thank you so much for the reply! I'm so sorry for your situation. My situation has changed over the past two weeks. Mom fell two weeks ago and shattered her upper arm. She had to have three plates put in. She's now in a rehab facility and will be there till mid-April. After that, we've made the decision that it's time to place her in a nursing home. It's the hardest decision I've ever been a part of, but a necessary one. My brothers have stepped up (some) over the past two weeks, but I can see that once she's in the nursing home, the majority of the visits will still fall on me. She asked me yesterday when I was leaving if I would be back tomorrow. I told her I would and that I was sure one of my brothers would be by too. She said she really didn't care anything about them coming by, she just wants me. That adds so much pressure on me, but I've got to start stepping back a little bit. I'm running myself ragged and it's not fair to my family. Once she's placed in the nursing home, I'm going to come up with a schedule where one of us is there each day for a visit (so she won't go a day without seeing someone), but it will be an EQUAL schedule. There's 5 of us, so it's do-able without being too much on any one person. We'll see how/if that works. Thanks for everybody's replies and my prayers and thoughts are with all of you.

over 3 years ago
donnamills47 said...

Hi Gail, I took care of my mother with Alzheimers and her sister who was mentally ok at 98 but needed physical help. When my mother finally fell down, she had to be put into a nursing home because she needed 24/7 care and I was alone with her sister. I personally think that nursing homes are better for the elderly because they have people to talk to and hang out with and eat with and they are almost never alone unless they want to be alone. You are a care=giver, but I think it's more difficult for guys to be caregivers for their mother's unless it's their calling and they do it for a living. I take care of a man who has had parkinsons for 28 years now, and I used to get angry because his two children don't see him or take him places, but I realize that some people just can't handle seeing their parents sick and some have issues from the past or who knows, but being resentful toward them for your own expectations will only hurt you. Whatever you choose to do, there's no reason any guilt trips.

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over 3 years ago

Are you guys a part of any support groups? That would definitely help!

over 3 years ago
JoJo1980 said...

I can relate 100% here, I LOVE my mother so very much, I have been caring for her for the last 10 years and on some level...all my life after my Dad passed away when I was a kid, long story but anyway she has 2 sisters & 1 brother but he lives 5 States away so I don't blame him, 3 grandkids and loads of nieces & nephews and I get to do it all, same with my Grandmother before her when she was ill and dying, nobody else helps out with all the ppl in our family and that just sux. My Mom is in the hospital right now with pneumonia and not doing well at all, she is end stage COPD and broke her hip last year so she can't walk anymore & has dementia, things look bleak :-( Good luck & God Bless al the caregivers out there...God has a spcecial place for us at his table or so I've been told over & over xo xo UPDATE: My Mom passed a few days after I wrote this :-( so sad

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over 3 years ago

My mom has had PD and dementia for five years. I am the primary caregiver and have a very good relationship with my out of state brother who helps as much as possible from a distance (managing finances,finding assistance, etc). He also recognizes the toll this is taking on me and defers to my thoughts when it comes care giving decisions, until lately. We are at the point where mom needs 24 hour care and both he and my husband are pushing the nursing home because of the toll it is taking on me. They are doing this to ease the burden of that decision from my shoulders. I consider myself lucky while living through this horrible, horrible disease, to have them supporting me.

For those of you who are caregivers and are getting no support from other family members or opposition to your decisions, tell them all to take a hike....see a lawyer and get the POA. You must always, always take care of yourself first so that you can continue to take care of the person with the disease. That gets more and more difficult as time passes, so put a structure in place as early as possible that will help you when you need it.

Good luck to the caregivers going through this....to family members who are not helping, you truly have NO idea of what is happening on a day to day, minute to minute basis, so just walk away rather than get in the way of those that are providing the care.

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over 3 years ago

Bless you. I have had two friends in your situation--one with some support and one with none. It has been so difficult for them since they both have to work outside the home. The toll on them physically and emotionally was extreme. All caregivers need our prayers and actual help if we are in the position to offer it--casserole, walk the dog, grocery run, visit or phone call, whatever. Sometimes they just feel so alone. My friends' parents are now in nursing homes and it is easier for them physically, but the toll on them emotionally is still tremendous. Fortunately, my mother is still healthy and I thank God for that. Please keep caregivers, their families, and their sick loved ones in your thoughts and prayers.

over 3 years ago
stashlover said...

oh yes. I have taken care of my 98 yr old father for 5 yrs. as he's been in the hospital and skilled care off and on. My older sister use to take him a week at a time in the summer to her summer cottage but as she's approaching 70, her health is deteriorating. she doesn't even come down to sit with him or eat lunch with him. My husband, like yours, does more for him than I would have ever expected. if it wasnt for him, my dad would not be able to stay with us. My sister wants him in a nursing home and the Dr. said he wouldnt last long there. Expectancy in a nursing home is 2 1/2 yrs and they do not take care of your loved one like you can. If at home you are looking at about 7 1/2 yrs. or so depending on the age. I have 2 suggestions, 1 see if you have a program like Life Pittsburgh in your area. they come out, dress, feed and take your loved one to their center where they have their own doctors and therapy personell to take care of them. they come home every day. the other suggestion is: if the brothers don't want her in a home and want you to continue to take care of her and not them, have them pay for respite so that you and your family/husband can have some free time to yourselves. It is very hard to be the only ones that can take care of someone in that particular elderly age group. Good Luck Keep on truckin as the good Lord has a front row seat for you up above.

over 3 years ago
stashlover said...

your mother is at her final stages of COPD? What has she encountered over the last year? My dad has Asbestosis COPD and he thinks he has something in his throat and says he is full alot. Sometimes his stomach hurts between his rib cage, like an ache. If you can post anything that would help me with my dad that would be well appreciated. God Bless each and every one of us.

over 3 years ago
stashlover said...

Wow. i thought things between my sister and me were bad, but we never said we never wanted not to be sisters even by choice. You can pick your friends but not your relatives. If i was you, i would look into his will with his lawyer. My cousin did the same thing with us, her cousins, on our aunt's will. she had it all switched to her name and the rest of us never received anything. i know my aunt is rolling around in her grave many times. this aunt had no children, just a niece who took her for everything she could and still now is in the healthcare/healthaid field. God help all those that she takes care of as they probably won't have anything left. Keep on asking questions and good luck.

over 3 years ago
JoJo1980 said...

Stashlover, My Mom passed 2 months ago but she had the COPD for well over 20 years prior, She was in & out of the hospital for the last 10 years with lung infections and pnuemonia to many times to count, she lost weight about 5 years ago even though she was eating @ that time, not good but eating, she became more confused due to her oxygen levels being so low and not getting enough to her brain in the last few years, she fell and broke her hip (osteoperosis) almost 2 years ago when I stepped out for a little while to run errands and it was downhill from there, after the surgery her the dementia got way worse, she got mimimal physical therepy at the nursing home they sent her to for rehab and event though I went most everyday to see her she was negleted, one thing after another, she stopped eating anything except Ice Cream the last few months before she passed, she would not eat any real food at all, that and Ensure sustained her, me my brother and husband took care of her at the nursing home more than anything the Aids or nurses did, if she could have walked or her mind was ok I would NEVER have left her in that place, haunts me to this day :-( COPD robs our loved ones of everything at the end especially but again it took my Mom 20 years after her diagnoses to get that bad. I tried everything I could to keep her home with me, the State of NJ wouldn't help me keep her in her our home but paid that darn Nursing Home a lot of money! That still makes me so mad, we even had to give them half of her Life Insruance money so she would get Medicaid, they make sure you are left with NOTHING! I am still very bitter about the system and the quality of care of our sick and eldery loved ones, breaks my heart :-( God Bless you & good luck with your Dad....xo xo Rest In Peace Ma, I miss you more than words :-(

over 3 years ago
LadyDawn said...

Gail, Just to get this straight - your brother(s) thinks that $20,000 buys a slave in today's market? Or Nursing Home care for 5 years? In what century/economy do you brothers live? As the only daughter you are between a familial obligation and 4 rocks.

Since your mother is apparently not well enough for Adult Day Care, you need other alternatives.

First make a list of your own needs. Time off for a weekend? A week for a family vacation? Financial contribution for 4-6 hours of nursing care a day? What do you and your family need? Do you need one of them to appear for one day each weekend so that you and your husband can have 1 day off a week?

Present that list to your brothers and their wives as a group. You don't need to ask permission and you don't need to take any bullying from them. Tell them that caregivers from all over are 100% behind you. Tell them that the $20,000 is off the table and is no longer fair game in the discussion because $4,000 per year doesn't buy much and that has been spent on room and board for the last 5 years.

If they refuse to hear you, present them with the nursing care options - do your homework - have the brochures ready.

I don't know who I'd ask to sit in on such a meeting but perhaps you do. A minister? A group leader? A social worker? Someone may have to moderate this meeting so that your brothers will not try their nonsense again.

In some families siblings figure it is easier to allow one sibling to take the place of the parent by becoming the sole caregiver. They fail to recognize that the mental and physical health of the caregiver is also important. This is the real issue. How can you provide the best care for your mother and continue to do so if your own mental/emtional/physical health is in jeopardy?

We all relate - in our family my grandfather's caregiver was my mother. When she wanted to take a trip she simply told us that it was our turn. Since my grandfather was in pretty good shape until the last couple of years and a delight to spend time with anyway, it was easy to have him stay with us for a few weeks now and then. My husband has PD and has mixed needs now. But that is the for better or worse part.

Stand your ground - you'll do better by your mother and your marriage.

over 3 years ago
Capricorn said...

I understand your frustration. My other half had Parkinson's for some years before it was recognized and diagnosed. After it was diagnosed and he was on medications we had Home Health Care coming for physical therapy and to do his blood work as he was on coumadin. There were also aides that could come for bathing. Even so it was hard because he didn't sleep regular hours and would call me all during the night to go to the bathroom and for drinks of water, etc. So any solid sleep was impossible. The social worker at Home Health Care was able to recommend a young lady who could come sit with him while I did groceries or had a dinner out or she could do a chore at the house. She was reasonable and a life saver but he had a sudden and swift deterioration for which the home health care nurse called his doctor and insisted that we have hospice step in. He was falling often and then could not stand at all. Hospice was miraculous, amazing organization, communications, and amazing swift implementation of medical equip. and meds for us at home. I did not know there are different hospices and that their quality of care might differ.

Your brothers really need to step up to the plate and if they can't or aren't able to donate some time for you and their Mom they need to chip in to get home heath aide help in your home so that you can get some sleep, get out of the house. whatever. You need that. If you have a church they might also be able to help. Ask friends or neighbors. I know we sometimes have a hard time doing that but we need to help each other in such times. Although I made my availablitity known, a couple of my neighbors toughed it out alone never asking for help and I feel so bad now that I know what they went through. Maybe you need to tell your brothers what you need and when you need it. Maybe asking just isn't enough. I pray for you to have all the courage, strength, tolerance and assistance you need during these times. God bless you.

about 3 years ago
lilwina said...

I can totally relate! I'm in the same boat with you. My mother-in-law was diagnosed with PD about 3 or 4 years ago, but I have been looking after her for almost six years now. Even though I live in another state, I would make the trip to her several times a month to take her to doctor's appointments and to manage her medications, helping out with shopping and other errands. Until last year, she was living alone and doing a fair job of it. Then we started noticing that her confusion was getting worse, she wasn't bathing herself, she stopped cooking and eating. She would mix up her pills and put them in a baggie, not taking them because she didn't know what to do with them. At the end of December, she had a "mental break" and has been living with my husband and me ever since.

Up until a few months ago, my husband's siblings were perfectly content to leave her in my care. As you said, they would make their "token" visits or phone calls, but didn't care to be bothered. The last few months they have come to realize how much she has gone down hill and are feeling guilty for not spending more time with her. Although my husband and I give them frequent updates concerning her health and progress, lately they just want to cause trouble. They don't want to care for her themselves, but suddenly, they don't want us to do it either.

I try very hard to keep these family disagreements from my mother-in-law. I breaks my heart to see her battling with the thought that her children are fighting and threatening each other over her. I wish they could see and understand what their fighting is doing to her. When she stresses about something, she stops eating, sleeping, her general health takes a downward turn. Unfortunately, these down slides are extremely difficult for her to recover from. This last one has really taken a lot out of her.

And also, like you, although promises were made when "mom" came to live with us that they all would make time to give us free time and visit her often. That hasn't come, not once! Several plans that were made well ahead of Christmas have been thrown to the side. And the sad part is, the brothers and sisters don't care, or it seems that way. Even to have a few hours off is too much trouble. And if they tell me one more time that we need to take some time for ourselves, to let them know and they will keep her for a few days, I think I just might take their heads off!

I've been told many times that "there is a special place in Heaven for folks like us". I don't know if it's true, but one thing I know for sure; when all is said and done, my husband and I will be the lucky ones to have shared this time with her. There will be no regrets for not spending more time with her or doing more for/with her. The others won't be able to say that and will have to live with that truth the rest of their lives.

about 3 years ago
LadyDawn said...

Lilwina, you are most remarkable. Has anyone considered sending this discussion link to the siblings who are the cause of the ongoing comment?

over 2 years ago
celedoc said...

What goes around comes around-remember we are the blessed ones because we are in touch and sharing in this family love connection of longsuffering-it's very biblical and God gave you the love for your parents, we are only honoring back the love they gave to us. It's called sharing in the fruit from the family tree of love. love is a circle. from celedoc

over 2 years ago
LadyDawn said...

Celedoc - your comment that "love is a circle" puts everything into perspective.

Thank you from a caregiver whose husband with PD is tacitly refusing behavioral therapy for depression and anxiety and has simply taken to bed where he is happy to be waited on for everything but feeding.

While I am still working to find a solution to some issues, he seems less stressed and that is a blessing for both of us - despite the additional work for me.

Love IS a circle

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