My DH is in early stages and I live far from family

Dusty217

My DH is 67 diagnosis MCI due to Alzheimer's. From the scale provided by someone on this site I would say he is stage 3. I live in South Carolina and my kids as well as his brother all live in upstate NY. My daughter a NP wants me to move back. I'm not totally against the idea but am not sure when would be the right time. My DH is against the idea, and we both love it here. I do have friends nearby, but all are older like us. I'm 70 on my next BD. I'm torn between moving or looking for a MC facility for DH in the future. Not sure I would get alot of help from my kids as they both work and have young families. No decision is easy.

Maru

Obviously, I cannot tell you what you should do, but I will tell you what we did. We had already seen what happened when DH's father became ill. His daughter, who worked, had to drop everything and travel to take care of her father. So, when all our kids moved away we decided to move near to the two of them. We had to move a second time when the altitude became too much to handle, again, near other children. We made the second move right before DH was diagnosed with MCI and AL He was 86 at that time. It was hard on both of us but we adjusted. Now that DH is in Stage 4, I have become more aware of just how critical family support is for us. Our local kids and spouses are willing to come spend a couple of hours with DH if I want/need to get out, put alarms on doors, put up cameras, etc.

The experience of a lot of people on this site is that friends often drift away because they feel uncomfortable around someone with dementia. And, by the way, MC isn't always cracked up to what they claim…just saying.

Dusty217

https://alzconnected.org/discussion/comment/269054#Comment_269054

I know MC is a crap shoot. That's why moving back is most likely the best option. Thank you for sharing your experience.

H1235

Some things to consider. It may be easier to move now rather than when he is further along in the progression. Is there any chance you may need Medicaid to cover care costs (a facility is ridiculously expensive and in home help is expensive as well)? If so which state offers the better Medicaid option? Consider how things would go if something were to happen to you. If you need hip replacement surgery, have a heart attack, cancer or even if you pass before your husband, or just can’t keep up with it all, where would be the best place then? When your husband has passed and you are alone where would you want/need to be? As you get older you’re probably going to need more help and maybe even some care yourself, would you want to be near family then. Maybe read a few of the post from kids trying to take care of parents from a long distance. Is your current home a lot to manage? Would this move be an opportunity to down size? I can understand questioning how much help your kids might be there for you, but I think even a once a week visit to help for a few hour might look pretty good down the road. I know this may sound awful, but you should do what you(not your husband) think is best! This is a very difficult decision to make with so many things to consider. Even with your husband being in the early stages I doubt he can truly grasp and weight the pros and cons of a move.

Dusty217

https://alzconnected.org/discussion/comment/269061#Comment_269061

This is a case of knowing the answer and wishing I didn't ask. All your points are well said and much to think about. I can check Medicaid in both states; NY is more likely better. I am almost 70 and will need a new knee in the future so yes that's a concern. Not sure once I'm alone where I want to be…I hate winter…😃. The one thing is my home is one level with Walkin shower and small, so I have that going for me. My son in his current situation would move in with me but has young son's so likely in NY. I appreciate your thoughtful questions and I will look into what moving will mean.

Timmyd

My approach was to try to wait at least 3 months from the time information is available until making a big decision. When we got DW official diagnosis, all sorts of options ran through my mind, but I was determined not to make a big decision without taking time to let the information settle in. When it was suggested we move to be closer to family, I sat on that decision for at least three months.

Moving to be closer to family is a subject that comes up frequently in this forum. From what I have read, people's who make that decision have rather mixed experiences. It is not a given that family will support you in a way you hope or expect.

Dusty217

Thank you. I have time to weigh all of this. Thank you for your thoughts. I have some time as we have just begone this journey.

Biggles

We have had a similar experience as Maru. Four years ago we made the decision to move to be closer to our daughter and her family. It was a hard decision to sell our home of choice for 30 years. We downsized I didn't know how much that would affect me and had to start again, me 72 DH 74 and now around stage 5 or 6. We did, we have and it's terrific but it's taken a heck of a lot of determination, tears and laughter too.

The difficult part of this journey that is correct is that family are caring but don't have much time for practical help and friends from the past seem to scatter very quickly, but that gives you a clean sheet to start again. It's a very difficult time but work through it you'll get there good luck.

harshedbuzz

@Dusty217

I was the (only) adult child in this very scenario.

Dad's pre-diagnosis behaviors are part of the reason my folks moved away from the area where they raised me in PA. Over a few years, his unfiltered behaviors burned through a second social group in MD, so they bought a second place in FL and lived the snowbird lifestyle until the wheels came off the cart and mom made the decision to move back.

That said, there is no one-size-fits-all answer.

Given my lived experience, I would suggest you weight the risk/benefit ratios of both scenarios, have a frank discussion with each child independently to flesh out what "help" looks like to each of you and think about where you'll want to live in stage 8 as a widow.

The definition of help is critical. Many adult children have no idea what dementia looks like as it progresses. They may be thinking they'll exchange babysitting their kids (since you're home anyway) with mowing the lawn or ordering your groceries for delivery.

Realize that the benefit of friends may not be reliable. Almost all friends, especially those where both spouses are part of the mix, do fade as the PWD becomes less rewarding in terms of engagement and participation. Even friends who you see individually may become a smaller part of your world as you can't leave your DH home alone. Moving mom from her happy lifestyle in FL about broke me. She had built a busy life of shopping, the pool, days out and happy hours with friends only to move to a place where she no longer had any connections beyond me. That said, within a few years of her leaving FL all of her neighbors had either died or moved back to where they came from. If she had been younger and healthier, it might have made sense for her to stay in FL.

Another piece here is the risk of staying put. At some point, your DH will not be a reliable safety net for you. He may not notice or know what to do if you needed medical attention. While mom did have a full social life, she didn't have the sort of friend who could be called on to be her advocate or able to step in for dad in the event mom was sick or injured. TBH, I don't think anyone of her friends in FL knew how to contact me in an emergency.

The event that drove mom north was when she suddenly developed auto-immune hepatitis. She was the color of a school bus, sleepy and confused. I called almost daily so I knew mom wasn't feeling well. When she stopped answering her phone, dad told me she was better and out with friends or at the pool which was plausible. When dad didn't answer his phone a few times, I had the local police do a well-check— dad answered the door and told them mom was out with friends. The next day he took her to Publix to buy his dinner when a neighbor saw her and immediately drove her to the local hospital. They called me the next day having gotten my emergency contact information from her PCP who was a part-time hospitalist.

I won't sugarcoat it, moving back hasn't been wonderful for mom. She does have a much better medical team here than she had in either place before. She's enjoyed seeing her 3 adult grands although the close bonds she had with them before moving are not as great. When dad was still alive, she was really too busy to be socially active and most of the friends she'd had here had moved away or were dealing with their own health concerns. She bought a lovely home in an active adult community with outdoor maintenance and all the amenities but she's older and kind of invisible to the late 60s- mid-70s aged folks who live there. Maybe it would have been better if she'd agreed to move when she was younger.

I'm older than your DD and my son was an adult when mom moved back. The move was a huge impact on me, too. I managed the logistics of their move. I arranged the repairs, staging and sales of both houses, had cars and furniture shipped, found a temporary apartment and then house for them, and lined up medical care for both (mom sees 10 different docs at least once yearly). It was basically a fulltime job for a year. I suspect moving before a crisis-event would have been easier on everyone. FWIW, dad didn't want to move. I suspect he saw it as a loss of autonomy especially since mom previously deferred to him and he knew I would be the one making decisions going forward. That said, I dearly wish they could have done the move sooner and with more input than they had— dad was beyond logical decision-making and mom was too distracted to participate fully.

That said, if you do decide to move, if there's anyway you can pull it off by going north for a stay and selling/closing up with SC property once he's elsewhere it'll be easier on you both. Dad was in a rehab when I set up their apartment and they spent the weekend in a hotel while I moved them into their new home so that they returned to the house in turn-key condition.

Good luck whatever you decide.
HB

Dusty217

So much to unpack there. And so much good information. I appreciate the in-depth history of your mom's (and your) journey. I have much to think about. I should add a few things to my story. Right now, I am in good health but have bad knees and Lupus. One knee is replaced the other may /will need it in a few years. Lupus is well controlled. 1 plus is my sister also a nurse is talking about moving here and likely will. She is single and almost retirement age. Her family is also in NY so not a given that she will move but she realy wants to. Our mother had AD and she with my help took care of her at home until she passed. Another factor is my daughter is a nurse practitioner. Good and bad. Good as she is a great resource, bad as her work means long days. I really wish I could see the future and know how fast my DH will decline. He will be starting Laqembi next month and I'm hoping that will slow the decline. I'm glad I don't need to make the decision today, but I would say the next year should give me more clarity.

WIGO23

Two years after my DH was diagnosed with ALZ, we moved from our home of 72 years from Florida to South Carolina to be near our daughter and son-in-law I was concerned the help they thought they could provide would not be possible due to time constraints of two working professionals. I was right. My concerns included losing long standing doctors and dentists not easy to replace. I was right. I was concerned that friends would be hard to make. I was right. I was concerned that moving might actually make us very unhappy. I was right.
Each person’s experience is different. I hope your decision proves to help you not hurt you as ours has.

Dusty217

Thank you, I

https://alzconnected.org/discussion/comment/269117#Comment_269117

Thank you, every situation is different and I fear all the things you mentioned. I don't intend to make this decision for some time due to all you mentioned. My daughter really wants us to move, and I needed the pros and cons to really clarify my reasons with my daughter why I am not selling today and rushing back to NY. I think one year will tell me more.